Friday, February 8, 2008

Stardust and Ashes

A few years ago on Ash Wednesday, I attended the evening service—complete with imposition of ashes—in my Episcopal church, drove back to my end of town, stopped by my neighborhood grocery store, and quickly realized that I wasn't the only person in the store with an ashy cross on my forehead. A smattering of other shoppers had it too. The really interesting thing was the reaction of people who didn't know what it meant. Judging by their alarmed glances, some of the shoppers suspected cultists in their midst. I heard one shopper, a bearded white guy in a Hawaiian shirt, shorts, and sandals, ask a clean-cut black grocery store clerk what the smudged foreheads were all about.Answer: they're from the Catholic church across the street because it's a Catholic holiday.

Well. Ash Wednesday is not exactly a holiday, but a holy day, yes. The ashes come from palm fronds that were carried in festive procession around the church the previous year on Palm Sunday.At one point in the Ash Wednesday liturgy, the priest traces ash on each congregant's forehead in the form of a cross with the words, "Remember that you are dust and to dust you will return."Remember that you will die.

We are stardust, carbon and oxygen and all of the other atoms heavier than hydrogen and helium, atoms forged in giant stars that exploded as supernovas. To scattered atoms and molecules we will return;that's one way to look at it. Another way to look at it is what I've been seeing for the past year:a parent with Alzheimer's. The human brain is the most complex thing we know of in the universe. Alzheimer's unravels it. The strands of cognition, perception, judgment, memory, intelligence and reason are normally tightly woven together into a supple fabric of mind that we take for granted. With Alzheimer's the strands pull loose and tangle like torn fabric. Remember that you are made of unthinking matter and to unthinking matter you will return.Remember that it may be a slow, painful, humiliating return, too.

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In early December of 2006, I got a phone call from my mother's best friend to tell me that my mother was in trouble. The next day I flew from my home in Houston back to Columbus Georgia, where I did most of my growing up and my mother still lives. As soon as I got there it was obvious that Mom was not the person I've always known, sometimes liked and sometimes disliked, and generally been able to predict. She was different, unpredictably and in a way that had to do with cognition.She'd gotten lost driving to a doctor's office that she'd been to many times before. Her cable TV setup wasn't working right because she'd forgotten how to work it. She couldn't keep track of the day of the week.Some of the things she said were repetitive and paranoid. She couldn't think of basic vocabulary words. The window air conditioner was "that machine." It all added up to senile dementia and I didn't know how in the name of Heaven or Hell to cope with it.

Like everybody, I've had a few difficult Christmases:the Christmas in college when I had major depression; the Christmas, when I was eleven years old, that my beloved grandmother died; and probably the Christmas after my parents divorced, though I was very young and don't consciously remember that one. Anyway, for me or anybody else Christmas can be a season of crisis. In that case, it's not the kind of Christmas we Americans love to love—it's not like the birth of healthy child into a happy family in prosperous circumstances. More like the first Christmas:the birth of a problematic child to displaced, isolated people in a cold, uncomfortable and uncertain situation. In the Christian telling of the tale, comfort and joy broke into very unhappy circumstances.

So it was for me in December of 2006. Before then I'd only vaguely heard about care-giving agencies. But in a file where for years I'd been stashing information about aging that I might need to know someday, I discovered a newspaper article I'd clipped from the Columbus Ledger-Enquirer. The article was a nice write-up about the local office of a national care-giving agency called Comfort Keepers. So I called them.My call came out of the blue in the middle of a busy day and I was just a random caller. But from the other end of the line, Al Abbot promptly gave me a rundown about the typical progression of Alzheimer's. He knew where I was coming from and he knew the lay of the land in question. His sympathy and knowledge made a huge difference to me that day.It was the first break in the gloom of not knowing what to do for Mom and for myself.

A few days later I called back to ask for a visit from the Comfort Keepers care coordinator. That's the first step taken with a prospective client. I had to return to Houston soon, but the care coordinator, Carla Teagle, managed to make the visit while I was still in Columbus. Compassionate, astute, and adept at conversing with Alzheimer's people and their badly rattled family members, Carla came to my mother's house, where she talked to both of us and suggested one of their caregivers to work with Mom. It's like matchmaking. The care-giver and the client need good chemistry with each other. We set up a once-weekly visit with a caregiver named Mary Ann.

Mary Ann started helping my mother once a week for four hours, usually but not always on Tuesdays. As quickly as that, a huge thorny burden rolled off my shoulders. I'd been wondering how I could possibly orchestrate the many doctor visits my mother needed to rule out treatable conditions that could cause dementia. With Mom unable to drive and most of her elderly friends in the same boat, the logistical problems were more than I could handle from Houston. Mary Ann promptly, kindly and effectively took care of it. Comfort indeed!Mary Ann drove my mother to doctors' appointments and relayed back news of how the appointments went and when new appointments had been scheduled.

In due time, Mom's neurologist determined that her condition was Alzheimer's. He prescribed the drugs Aricept and Namenda. Note to anybody who needs to know: Alzheimer's medications don't cure the disease. With luck, though, they slow the progression of it. They buy you time.

Mary Ann helped Mom get her new prescriptions filled and refilled along with a several more ordinary medications that her primary care physician had her taking. Besides doctor visits and prescription refills, Mary Ann drove Mom around for routine errands. So Mom had a weekly outing, an opportunity to enjoy shopping for groceries for herself and her cat, and a meal away from the house. She also benefited from a reliable companion who could be calm and pleasant with her. Take my word for this: it's very, very hard for an adult child (or spouse) of somebody with Alzheimer's to be their amiable companion. You're stressed out. You remember what your loved one was like and you lose patience with what they are now. When you glimpse what they will become as the disease inexorably progresses, you're scared silly. They, however, still have the basic human needs as everyone else; they need companionship once in a while. Companionship simply means your loved one sharing a few tasks, a laugh or two and a meal with someone who isn't shaken to the core just by being in their company.

Mary Ann was wonderful. Al and Carla were there at the Comfort Keepers office number when I had questions. They saved the year 2007 for me.

2007 was the worst possible year for my life to be potentially derailed by my mother's needs. My first novel came out in July. I experienced the whole enormous emotional roller coaster of reviewing galley proofs, negotiating edits with the copy editor, and finally seeing my mind child birthed. Then I had to promote the book with press releases, book signings, interviews and appearances at science fiction conventions. I also committed to teach two new classes in creative writing through the Rice University School of Continuing Studies. How I could have kept my career afloat and taken care of my mother without Comfort Keepers I can not even imagine. A wise friend of mine commented, "The people in a business like that know they aren't just there to help your mother.They're there to help you too."

My mother was able to remain in her own house for nine more months after she started taking medications for Alzheimer's. She had time to visit with the dire truth and, I think, realize how compromised and unhappy her life was going to be if she continued to live in a house by herself. She couldn't drive. She couldn't go first thing in the morning to walk in the park, as she loved doing for two decades. She could no longer write checks with enough accuracy not to overpay by hundreds of dollars. She couldn't put things in the right places or find them where she'd put them. In the confusion of her frayed brain, she became convinced that a neighbor was regularly breaking into her house—to steal her ratty old broom or to exchange a folded blanket in her hall closet for another, less desirable, blanket.

My Columbus cousins came to the rescue in several little house-related crises, such as Mom forgetting how to operate the window air conditioner or the clothes dryer and the latter actually going kaput. Thanks to Comfort Keepers, with additional thanks to my cousins, modern pharmacology, Meals on Wheels, Mom's friends Mickey and George, and the feline companionship of her cat Jazz, Mom remained at home for a full year after Alzheimer's entered the picture. She managed not to have an injurious accident, or overdose herself on her medications, or misuse the stove or space heater and burn the house down. Meanwhile I had the freedom to take care of my book and the time to plan the next, momentous step for Mom:assisted living.

Note to anyone whose loved one has Alzheimer's: caring for a loved one with Alzheimer's is one of the harshest jobs in the world. Many people are just not cut out for it.I'm not. I turned out to be rather good at logistics, finances, and making solid and compassionate arrangements for my mother. But being her care-giver was completely out of the question.Me trying to care for my mother in Columbus, in Houston, or anywhere between here and the uttermost ends of the Earth, would have been a disaster. If your resources can conceivably stretch to cover it, employ care-givers to take part of your load.And do it before the situation overwhelms you. Care-giving agencies, not to mention assisted living, do look expensive compared to living in a home that one owns.But you're not comparing those alternatives to somebody able to get along in their own home. You're making a comparison to the terrible financial, emotional, and physical costs and risks of caring for a loved one with Alzheimer's. To our society's credit, and to the even greater credit of the fine professionals in the field of care for the sick and disabled elderly, there are alternatives that didn't exist a generation or two ago.

Early on, I visited an assisted living facility in Columbus called the Gardens at Calvary. I loved it at first sight. The locale (beside a wooded stream valley with trees and birds), the architecture (up to date but not objectionably modern, with elder-friendly details and lots of natural light) and the pleasant professionalism of the staff deeply moved me. The place actually struck me as rather like a motel in or near a national park. If you enjoy traveling to marvel at nature, you may have stayed at such a place, and you'll recognize what I mean.A lodging place that's not excessively fancy, but with all the amenities you really need; right near of a remarkable natural destination;staffed by employees who feel lucky to work there; and with people staying there who have much in common and are enjoying themselves. It may be hugely counterintuitive that an assisted living facility struck me that way, but this one did.

One important consideration was that Mom wanted to stay in Columbus. I felt sure that being in Columbus with the birds and the trees and the light and weather she's used to would be good for her, not to mention having friends, nieces and nephews nearby. Also, I admit, I emphatically did not want my mother in Houston with me. In March 2007, Mom visited the Gardens at Calvary. She liked it as much as I had. We even saw a bluebird in a tree in front of the building. The bluebird of happiness, perhaps?Her name went on the waiting list.

Three times last year, Mom's name came up on the waiting list. The first two times I was in the throes of book promotion, including a sequence of four science fiction conventions in three months. My cousins reported that Mom was still getting along fine in her house. Mary Ann and Carla concurred. The third time, just before Thanksgiving, felt like the charm.I took a deepshaky existential breath and put the wheels in motion. Note to anybody who needs to know:the best time for an Alzheimer's person to move is before they lose so much cognition that they can never adapt.Back in March, Mom's neurologist point-blank advised us to look at assisted living and make it happen within a year.And we did.

My Columbus cousins had helped Mom move into her house 30 years ago. In December of 2007, they moved her from her house to assisted living. Mary Ann came for several more weeks to provide continuity and help Mom with odds and ends she needed.In the future, if Mom ever needs one-on-one care for a few days, if, for example, she sprains an ankle or has the flu, I can call on Comfort Keepers again.That's another thing they do, and it can keep an assisted living resident from having to being dispatched to a nursing home to recover from a serious but temporary ailment. By Christmas, Mom was in residing in the Gardens at Calvary.

For the first Christmas in my life, I didn't get a Christmas present from her.That felt sad and deeply unsettling. On the other hand, I got what I wanted for Christmas:Mom comfortable, safe and happy in her new home.

My first impressions were on target.The Gardens at Calvary is a good place. It offers nourishing meals and a full slate of activities for body, mind and soul. Nursing staff give my mother her medications, which eliminates the dangers of over- or under-dosing. There's companionship for her too. The other residents include people with many degrees of functioning and non-functioning bodies and minds. When the time comes—which it will, unless physical health crises trump the brain's unraveling—the Gardens has a Greenhouse. That's a wonderful new concept in Alzheimer's care:having architecture and daily routines that evoke a private home rather than an institution.

The Gardens at Calvary, Greenhouse and all, is even a joyful place, as surprising as that may seem. I felt joy in visiting my mother in her new studio apartment, in her showing me the floors and the sunny back porch and the chapel on New Year's morning, in meeting some of her new friends, and in hearing her look forward to the birds in the springtime. (Joy also happens to be the apt name of the indefatigable activities director!)

Well-designed surroundings, wholesome daily routines, and humane, effective care are what all assisted living facilities aspire to, and from what I can tell, a fair number of them succeed. What's good, right, and joyful about the Gardens at Calvary goes even deeper. It's a ministry of Calvary Baptist Church. The staff of the Gardens includes a chaplain. What an excellent idea! The residents are highly likely to experience illnesses and the deaths of friends and relatives while their own death is not too far off. The residents' adult children experience the emotional turmoil of having a parent in advanced age with illness, debilitation and/or Alzheimer's. An assisted living facility is on a par with a battlefield or hospital as the natural habitat of a chaplain.

And then there's that first impression I had.The counterintuitive impression of a national park motel: not luxurious but with all the amenities you really need, very near a remarkable natural destination, with staff who feel lucky to work there, and people staying there who may not be staying for a really long time, but who have much in common and are enjoying themselves. That impression has stayed through the visits I made since the first. Yes, there's the whole human spectrum of health and sickness, good days and bad days, various moods and motives.And yet:this assisted living community truly does seem to be near—and aware of being near—a remarkable natural destination, like a Grand Canyon, not made of rock and water, but rather in the landscape of the spirit. The natural, grand, nearby destination is breathtakingly obvious. It's death—the kind of death that ends a long journey through life and enters the nearer presence of God.

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After Mom moved to assisted living, I had to get her settled, empty her house, give away/sell/throw away/gift away innumerable belongings loaded with memories, and prepare to sell the house. There were misplaced bills to uncover and missing documents to look for. I had to find a home for Jazz the cat. I had to figure out what to do the childhood mementoes of mine and the family furniture that remained at her home. And clarify and arrange her finances to pay for her assisted living. And on and on. I had tremendous help from my Columbus cousins. Very happily for me, they are in the estate sale business. They are pros at handling all of this stuff!It wasn't easy, but the house got cleaned up, the junk thrown out, the valuable possessions sorted out. I did all of this in a blaze of emotion and energy, a physical and emotional tour de force from which I'm still feeling the aftereffects.

It felt quite different from clearing a house when someone had suddenly died or is suffering in a hospital or nursing home.My mother was in her new place and happy.I had work to do, but it wasn't agonizing. It was, however, intense. Part of the work I had to do was salvaging memories. Not for my mother, but for me. My mother has never been good at remembering things. Not the major milestones in my life, much less things important to me for other various reasons; not vacations and trips we took together, much less anything I ever did on my own. Or if she ever remembered she was never able articulate it. In that regard, I've been on my own for a long time. One of the areas of failed memory pertained to my maternal grandmother. She helped raise me for seven years, between my parents' divorce and her own death. She loved me—I know that—but I've always had a mystifyingly hard time remembering her.That may have to do with the divorce, which was botched and went even worse for me than it had to. If your earliest experiences of relationship and loss go badly wrong, subsequent ones are very likely to follow suit.

In cleaning my mother's house I found myself recalling my grandmother. There were things of hers still in the house. It was easier to remember her ways and habits in that house than elsewhere else, and for the first time ever, my mother was not around. I could remember in solitude. It helped that the Columbus cousins reminisced about our grandmother. I soon realized that with her having been the industrious woman she was, there was no better way to remember her—almost channel her—than by rolling up my sleeves and doing hard work that needed doing for the sake of love.

Just before Epiphany, my uncle died. The oldest sibling of Mom's, and the only remaining one, he was very elderly and in poor health, so his death came as no surprise. It was nonetheless a shock.Fortunately I was still Columbus. I broke the news to Mom in person the day we cousins got the word. On the way into the Gardens at Calvary, I mentioned it to the people in the front office, just in case they wondered about why she was suddenly withdrawn or forlorn.

Chaplain Vern materialized almost immediately. He talked with Mom about her brother, and then was she able first to cry and then to reminisce about him.Chaplain Vern is good at what he does, and what he does is good.

I drove Mom to the funeral in Troy, Alabama. This was probably the last trip my mother will ever make.It was a surprisingly good one for her. All the way over she recognized favorite landmarks—the Alabam two-lane-road scenery, downtown Union Springs, North Three Notch Road in Troy. At the funeral home, we met up with a lot of members of the extended family, including people I hadn't seen in decades. They showed a lot of love for my mother. The graveside service took place in the cemetery where my grandmother and many other family members are buried. All in all it was far more a healing occasion than a hurting one.

Afterward, we visited another of my cousins at his home outside of Troy. He lives in the onetime farm house that my mother and another uncle helped build for my grandmother in the 1940's.He's remodeled it but, to my great joy, in doing so he respected the original integrity of it. It was where I lived with my grandmother and my mother right after the divorce;it's the very first home I can consciously remember living in. A good feeling has always suffused my memory of it. That came of my grandmother, I think. She was a deeply loving, greatly generous, incredibly hardworking woman.A southern lady and a school teacher in her younger days, she loved playing the piano. She played sacred and secular music, Broadway tunes and church hymns until arthritis finally afflicted her fingers to much for her to play the piano any more.

The last thing I did at my mother's house in Columbus was something I haven't done in many, many years:play a few notes on my grandmother's piano, in my grandmother's memory. My cousins and I think we've found a good home for the piano.If not, we'll keep looking.We want it to make music and make people happy again.

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For obvious reasons, Epiphany makes me think about stars. Not ordinary main-sequence stars, but stars that suddenly brighten and blaze— novas or supernovas. This particular year, all the way through Advent, Christmas and Epiphany, I was in a blaze of physical and emotional energy. After it was done—the assisted living wheels set in motion, finances lined up, the move to assisted living orchestrated, house cleaned, stuff given away, mementoes stored at my cousin's place, Mom settled in, cat transferred to a good home, uncle buried, Grandmother channeled, house in Columbus said goodbye too, house in Troy said hello to, and a thousand other problems and opportunities, most of them highly emotionally charged—I finally returned home to Houston.For the whole three weeks since then, I've felt like a pile of burned-out ashes.

How fitting, considering what day it is as I write this:Ash Wednesday.

One of the best things about traditional, liturgical Christianity is that parts of the church year consist of holy days that are not happy holidays. There are four weeks of Advent, the season of waiting and watching in darkness, even while the secular world prematurely revels in Christmas. There are forty days of Lent, and though stores trot pastel Easter-related merchandise, in traditional churches, it's most emphatically not Easter until after Lent.Also, every Friday in the church calendar echoes the Friday called Good.

There's something utterly true about Advent and Lent, Good Friday and Ash Wednesday. Some days are dark. Some seasons are times of desolation. Someday your life will end.And yet: ashes signify not only desolation but also renewal, not only sorrow but also the hope of joy, not only death, but also transformation.